Private neurologist in Scotland

[Swankee]

Like all the posts I am a long term RLS sufferer. All the drugs which are mentioned on the posts have been tried and the non drug related activities (eg good bedtime routine) have been tried. Unfortunately my GP has limited knowledge and is again referring me to an NHS neurologist. I have seen 3 already in my history of RLS, all with limited results. I would like to pursue this through a private neurologist as it is having an significant impact on my life. Does anyone able to recommend one in Scotland who understands RLS ?

[ChrisColumbus]

Someone here may be able to help you with your specific request for a knowledgeable neurologist in Scotland. But as youve already found there are *very* few really RLS knowledgeable doctors or neurologists in the UK.

However, you suggest that *everything* mentioned in this forum has been tried. Could you complete your Profile with the information requested in the Pinned Post linked below? As meanwhile we may be able to help you with advice and information here.

healthunlocked.com/rlsuk/po...

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

I can't help you with a neurologist but can perhaps help you otherwise. You can also see healthunlocked.com/rlsuk/po...

You say you have tried all the drugs. Have you tried gabapentin or pregabalin? Have you tried a low dose opioid?

You do mention pramipexole on your profile which is a dopamine agonist (DA) like ropinirole, neupro and carbidopa/levodopa. Are you aware that up to 70% of people will eventually suffer augmentation on DAs according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatments for RLS gabapentin and pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

If that is the case with you, reply back here and we can give you some advice.

[SueJohnson]

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Swankee in reply to SueJohnson]

Hi Sue, Thank you for your helpful comments. The forum has really helped me to get a better understanding of what works and what to look out for and what to say to my doctor.. I have updated my profile so you can get a better understanding of what I have tried

[ChrisColumbus in reply to Swankee]

Thank you for adding information to your profile. I can see that SueJohnson has come back to you with advice and more questions. Sue, Joolsg , Madlegs1 and others here will give you similar advice - and better advice than you are likely to get from almost any UK GP or neurologist (NHS or private). RLS is not taught to doctors in this country, and unfortunately NICE and the NHS are not up-to-date with advice from leading experts (who are nearly all in the US). If you go down the low dose opioid route and experience difficulty getting a prescription please use the following Pinned Post:

healthunlocked.com/rlsuk/po...

[SueJohnson]

Are you still taking amitriptyline? It makes RLS worse for most. Safe substitutes are wellbutrin and trazodone. Trazodone helps depression and also anxiety and insomnia.

To come off pramipexole reduce by half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Neither the gabapentin nor the pregabalin will help much while you are on pramipexole and if you were taking them when you weren't on them you may not have taken enough or in the right way. If they stopped being effective that means it is very likely they will be effective again so let me give you my usual advice.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg of gabapentin take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

You didn't mention ferritin so do have that checked. take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

And on your profile it would also help if you mention your gender.

[Swankee in reply to SueJohnson]

I am blown away over how kind and helpful you have been, I want to thank you so much. I have always been wary about using a computer for illness related issues as one could become paranoid but after all these years and relied on what the doctor said and not really understood what was going on. You have given me a clear way forward. You have given me "hope" that I can make things better. Its truly amazing to have someone who knows so much and happy to help others. Thank you.

[SueJohnson in reply to Swankee]

I'm glad I could help.

[Kaarina Administrator]

There is a Dr Colin 0'Leary in Glasgow that Scottie99 recommended some time ago. Perhaps you can contact Scottie by private message to ask any questions you may have about this neurologist. How up to date he is on RLS is another matter of consideration.

[SueJohnson]

Since I advised you on taking iron every day I did more research and discovered I was wrong. One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh...

[Swankee in reply to SueJohnson]

Many thanks for this latest bit of information, so helpful. I am to see the doctor later this week and will be the most prepared I have ever been. Hopefully will persuade them of the correct course of action which I should be taking. I feel armed and ready to go.